An exploration of identity in people with ME/CFS (version 1)
Research type
Research Study
Full title
A Narrative Exploration of Identity and the Impact of NHS Psychological Support in myalgic encephalomyelitis/chronic fatigue
IRAS ID
354931
Contact name
Maja Jankowska
Contact email
Sponsor organisation
University of Hertfordshire
Clinicaltrials.gov Identifier
TBC , TBC
Duration of Study in the UK
1 years, 8 months, 30 days
Research summary
This research explores whether NHS-supported psychological interventions influence the personal narratives and identities of individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). While these interventions primarily aim to manage symptoms and enhance well-being, little is known about their impact on self-perception and identity. This study addresses this gap by examining how programs that reframe thoughts, establish values, and set goals might also reshape how individuals see themselves in relation to their illness. Insights from this research could improve psychological services, aiding patients in integrating their lived experiences with ME/CFS while effectively managing symptoms.
Research Question:Do NHS-supported psychological interventions shape the personal narratives and identities of individuals with ME/CFS?
Method:A qualitative design will be used, employing semi-structured interviews analyzed through narrative analysis to explore how participants' stories reflect broader social and institutional contexts, including NHS influences.
Participants and Recruitment:Participants will be adults (18+) diagnosed with ME/CFS who have engaged in NHS-supported psychological interventions. Recruitment will occur through NHS ME/CFS clinics and networks using purposive and snowball sampling strategies. The field supervisor and three clinical psychologists will assist in recruitment, distributing research posters through clinic admin staff. Interested individuals can contact the student researcher or use a QR code to access screening and consent forms. Participation is voluntary, with no impact on ongoing treatment, and a £25 Amazon voucher prize draw is offered. Inclusion criteria include an ME/CFS diagnosis, participation in relevant interventions, and the ability to consent in English. Exclusion criteria rule out those with severe psychiatric or neurodegenerative conditions or comorbidities like fibromyalgia.
Data Collection and Analysis:Demographic data and in-depth experiences will be gathered via 90-minute interviews conducted on MS Teams, recorded and transcribed for analysis. Narrative analysis guided by Reismann’s (2008) framework will explore identity construction within social contexts. NVivo software will assist in coding, with reflexivity maintained through a reflective diary to address potential researcher bias.
REC name
London - West London & GTAC Research Ethics Committee
REC reference
25/LO/0370
Date of REC Opinion
11 Jun 2025
REC opinion
Further Information Favourable Opinion